On-Line Migraine Journal

The on-line migraine journal is intended to be an area for migraine sufferers to post their migraine histories and experiences.

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Hi, Everyone--

I can't begin to explain to you what a blessing this forum has been; Although, I'm sure most of you feel exactly the same way.

I have had migraines since I was 12 years old. I am now 23. When I first started getting them, it was once a month and exactly one week before I would start menstruating. By age 15, I was put on the pill and they reduced in frequency for a few years because the pill controlled my hormones. By age 18, the pill was not as effective for some reason (heavy mid-monthly breakthrough) and I began getting migraines all over again.

I found a pill that works for me, but the migraines have not gone away. Over the last 6 months, they have intesified severely. I became an insomniac (whether the lack of sleep caused the headaches or vice versa, I'll never know). I would get no more than 4 hours of sleep a night and I would get a headache so severe by the end of the day that all I could do was lay on the couch. My poor husband... I think he suffers more than I do sometimes.

Shortly after this started, I was referred to a headache clinic. He started me on a daily dose of Pamelor that did nothing but make me drowsy during the day. Finally, I found a dose that helped me sleep. I have been sleeping well for the last two weeks and I can't begin to tell you what a relief it is. I also have Indocin for my everyday headaches, and Maxalt for the big MONSTERS.

When the big ones hit... boy, do they knock me out! I have extreme sensitivity to light, sound and smells. I become incredibly naseous, but I've only actually thrown up once. All I can do is lay in a dark, quiet room and convince my husband that the best thing he can do to help me is just to leave me alone. Bless his heart... But luckily, my intense migraines "only" last about 6-8 hours. After that, I have at least two days of recovering before I feel somewhat normal again.

I thank you all for your support and understanding. It's such a great feeling to know that I do not suffer alone.
Hugs,
Erin

Erin <erinmfritz@yahoo.com>
Wednesday, July 6, 2005 at 15:09:32



Hi Guys! I recently completed 4 weeks of physical therapy for my neck. Since my headaches seem to run into my neck so much (or my neck pain runs into my head!) the nuerologist seemed to think it was a good idea. I really had a negative outlook on it but figured at this point it couldn't hurt.
Suprisingly 4 sessions later, it really did help some. I still get the neck pain, but it actually goes away some times now. I think those of us that live with Chronic headaches and other pain don't always realize the pain we are in until it actually goes away. Thanks to some really simple stretching excercises and a TENS unit, I actually get some relief. This also seems to have some impact on the headaches. Between that and the topomax I am not doing too too bad right now. I still have a headache almost every day, but I don't usually wake up with it and most of the time it's nothing that a single dose of med won't fix!! Granted this is no solution, for now, I'll take what I can get!!
Best wishes to all of you!!

Dell Jones <DeJ1215@aol.com>
Wednesday, July 6, 2005 at 15:05:05



Hi All

I just wondered whether anyone has had the same experience as I have.

I started getting migraines from the age of 13, when they used to be accompanied by vomiting and sever headaches. Usually once I threw up the headache would reduce in intensity and turn into a dull but persistent migraine instead of the awful intense one that felt like nails being driven into my head and behind my eyes!

However sometime around my 18th birthday these migraines changed and I started having visual disturbances, like a zigzag circle that would start small then get bigger and bigger. At the same time I would feel awful and disoriented. Similarly to before i would shun sunlight. smells and noises. once the circle was out of my peripheral vision the headache would start. However the headache was never as bad as those I used to have when younger.

I gave up red meat for 2 years and my migraines stopped instantly at about 21 yrs.

However, I have just had a baby 6 weeks ago and since then I have had 2 migraines of the latter sort. Ouch! I had been secure in the belief that they had gone forever but now I am worried since I have read a lot of entries where after childbirth migraines tend to come back or get worse.

Wonder if anyone has anymore info on this.

Thanks

M Roberts
Wednesday, July 6, 2005 at 12:45:50



As a long-time Migraineur, I have much in common with SO many of you that I felt the need to post my own story. My Migraines became their worst after I returned from the Persian Gulf during Desert Storm. Before I had gone, I had them about once every 2 or 3 months, but when I returned, they were up to from once a month to as many as 3 a week (or one REALLY long one that I couldn't get to go away). Being in the US Army until 1994, I had the 'benefit' of having medical assistance at my disposal when I needed it (well, of course I was accused of malingering because my supervisor and commander thought it was 'all in my head', but my doctors and medical records proved that accusation wrong). Upon discharge from the military, my fight with the VA began. Add to the Migraines the fact I also suffer from major depression and PTSD and a vicious cycle ensues. Miss work from the Migraine, add to the depression, then miss more work from being depressed, and trigger another Migraine. I had a terrific boss, bent rules, bent over backwards; but alas, there was only so much he could do, and the last I was able to work was August 2001. I did win 100% through VA though. But I had some good neurologists (cruddy ones too), and eventually came up with medications/nutrition that virtually eliminated my chronic daily headache (CDH) also known as 'transition Migraine' and can be brought on simply by overuse of NSAID's (asprin, ibuprofen, naproxen) - my overuse had also caused my creatinine levels to elevate to 1.4 (1.0 is as high as they should EVER be. After 1.0 it's exponential, and I basically almost killed my kidneys to the point of needing dialysis.)

So, before Topamax was ever released for Migraine treatment, my neurologist prescribed it to me. And yes, it has some side effects that do go away after a time (the pet name for the drug is 'Dopeamax' since for the first few weeks it makes you feel like Dopey from Snow White.) It also must be 'tapered' up to the proper doseage, and if not tapered correctly, can be a dangerous medication because it is an anti-convulsant that has been approved for this off formulary use as a Migraine prevention med. But if you don't taper up to your correct dose, or conversely, taper off of it if you are choosing to quit taking it, this med could cause seizures in someone who previously has not had them before. The other things that are really helping for me are that I switched from Imitrex to Maxalt (you have to go through the triptan meds and find the one that is right for your own Migraine, each one works differently for each individual, and if you start noticing that they no longer alleviate your Migraine, it's time to try a different one). Gabapentin/Neurontin did not help me, but it does help some people. Magnesium (my recommendation is that it be in magnesium citrate form which is the most absorbable and at least 600mg daily - especially if you take extra calcium because the calcium leaches magnesium, so if you don't have enough magnesium in your system to start with, well there won't be much for the calcium to try to balance out with).

Now as for Migraine triggers, everyone is different, but there have been some commonalities found for 'most all' Migraineurs. These are CAFFEINE!!!! Avoid it - besides which, you should SEE the PVC's your heart thoughs off after you've had your caffeine and are hooked up to your EKG. Chocolate - again, caffeine - it's in chocolate, plus the chocolate itself is a trigger; I've switched to carob (icky at first). NutraSweet (aspartame, Equal), MSG (monosodium glutamate) and this can also be disguised on some labels as 'other spices' but with the new labeling laws that is supposed to change soon. Those are the biggies, but most people have a few more food and environmental triggers as well. My environmental triggers include diesel fumes, bright sunlight (too long in the sun - vitamin D overdose), and ladies perfume (should be outlawed especially when they feel the need to bathe in it - haha!)

So that's about it for me. I've gone from my 3 time a week Migraine to monthly or sometimes less and no more daily headache. And those wonderful neurologists who tried to tie my once monthly Migraines to my monthly cycle didn't read my chart about my complete hysterectomy, so I walked out of that appointment. You always have the choice of your healthcare provider. And as for my sister who claims it's 'all in my head', I say, 'yep, that's where that depression and those Migraines originate from'; if she wants to be ignorant, that's her problem not mine. :)

Feel free to email me, I'm always up for a chat, a virtual hug, and a smile :-}

Donna S. Millar <wiggykitty@care2.com>
Tuesday, July 5, 2005 at 16:31:48



Please enter a message. :-)Hi. My name is Susan and I am 27. I have suffered from migraines for 9 years, since I started college. I tried every drug and treatment out there. I would miss up to 14 days of work a month due to them. Just to let everyone know, most jobs offer FAMILY LEAVE if you need to miss work for things you have no control over, and it covers you for this, and often times, as my job does, I receive 55% of my days pay as well if I have to miss work. CHECK INTO IT!
Finally in November, I got the Botox injections, as a last resort. Within the day I was feeling somewhat better. Within 4 days, that constant daily pain that lasts all day was totally gone. The stiff neck pain was gone also. Every 3 months you need to get more injections, quick and almost painless shots in the forehead, and neck areas. I have had 3 sets and I miss about 1 day a month now to migraine pain, and I have gotten my life, energy, motivation to live, and spunk back. It gave me back my life. More questions, email me. CHECK IT OUT!!
Susan

Susan Crease <susanandtimon123@aol.com>
Monday, July 4, 2005 at 23:21:39



Hello!
I've suffered from migraines for several years now and have tried many different meds. I work in a medical center and these headaches have really put a strain on my job. I have had the FMLA filled out by my healthcare provider, but yet I am always in constant fear that I will be without employment. It has come to the point now where I really cannot plan anything with my family and I often feel very depressed. After seeing this website I know that I am not alone. I've had members of my family tell me that these headache are, "all in my head", and I feel that no one understands, unless they suffer migraines themselves.

Erika Sosa <xerikaflowers05x@aol.com>
Sunday, July 3, 2005 at 22:54:34



Hello I am looking for someone to hlep me. I have a 9 year old son who has had migraines since he was 4yrs old. The strange thing is evertime he gets them he gets a high fever of 102. + and on one know why. he has had ever test and tried all kind of meds. they say maybe he will out grow it. well know my youngest child is 4yrs old and in the last month she has had the same problem a server headach with this high fever. now I am starting this long road with her but still cant find the sorce of the fever with my son. I come from a large family history of migraines with all the symtoms and from mild to sever systoms but no one has ever had fever with them. If any one can help me or has the same problme please contact me.

melissa coleman <melicole@med.umich.edu>
Wednesday, June 29, 2005 at 08:38:40



Hello, my name is Ariel Mendivil and I am fourteen years old and have had headaches and migraines since I was seven. when I first started to get my headaches they would only come around about once a week, but at about age nine I have been getting a headache everyday, it just doesn't go away, and about three times a week I suffer from migraines. I have been to numerous neurologist each thinking that they could stop my headaches and migraines, but none succeeded, although one neurologist did diagnose my with having Chronic Daily Headaches (CDH) and sever migraines. I have tried everything it seems like. I have done a CatScan, a MRI, taken herbs, been to chiropractors and deep tissue masseuses, taken almost every pill that is used or been tested to cure CDH, and have tried all sorts of different pills to help or prevent my migraines, but nothing seems to work. Now my neurologist is telling me that I am going to have my CDH and migraines for the rest of my life and now all he can do is try to find a pill that can possibly make them less painful. I am only fourteen years old and already having to live with this huge burden, so if anyone knows of anything else that I can try to stop my CDH and migraines please contact me and let me know.

Ariel Mendivil <MERMAID2452@aol.com>
Sunday, June 26, 2005 at 18:54:06



Hi! I am 28 years old and the other day my son asked me how long I had been having headaches. I really had to think about it, the answer almost suprised even me, 16 years at minimum.
I have just recently found this page in trying to do some headache research on my own, but I have quickly learned that I have much in common with many of you. Like the rest of you I do have migranes, although not as frequently as some of you. Sometimes I only have 1 a month, Sometimes 10. Never can tell, and no aura's for me, usually not even nausua, just BAM, hits you like a train. Because of this, for many years I couldn't get any headache treatments fromn dr's, they told me no nausua, no migraine. But in addition to the migraines, I have chronic daily headaches as well.And not just on occasion for a week at the time, I have a headache EVERY DAY!!!
For years I would wake up with it in the morning, the first thing I did was drink some caffeine and pop a BC before my feet even hit the floor. And I've read where someone said during pregnancy that there headaches went away. Nice thought, never had a moment of morning sickness, but my headaches were much worse. In 1998 I had a really bad headache for 14 days. Barely moved off the couch and missed some time from work. To me that was really when they began to get even worse.After I had my youngest, (5 years ago) my OB got me into a neurologist. He wasn't much help, said my MRI was clean, and that I had tension headaches. Put me on Pamalor, gave me some Imitrex which never helped and put me on Fiorcet and Tylenol 3. Soon after I lost my insurance and there went the trips to the nuerologist. Soon after I had insurance again and started back with a family doctor but they tried the low dose anti-depr again (quite a few, elevil, zoloft, etc.) along with the Fiorcet and Tyl 3. Soon they decided I needed to be on a full level of anti depressants because I was actually depressed (who wouldn't be with these headaches) and diagnosed me with anxiety problems. I have read that most people with chronic daily headaches DO also suffer from depression and anxiety. My doctor once said she thought ny headaches were anxiety driven, I believe the exact opposite. I survived on Caffeine (Pepsi, Excedrin, & BC's) along with Tyl 3 and Fiorcet for a couple of years. Occasionally a headache would really get me down, but usually the caffeine kept them down to a tolerable level. Of course sometimes I think tolerable for me, would probly put someone else on the floor.
This routine left me with a headache I just couldn't kick, I couldn't even get off the floor. My husband took me to the ER and there I stayed for the next 4 days.
I had previously not been seeing a neurologist but was assigned one upon being admitted. After days of Dilaudid and finally some IV type migraine medicine administered every 4 hrs for 48 hrs, I was released, restricted from caffiene and he started me on Topomax and I really did see some results. It did have some side effects, but nothing quite as drastic as what I have read from other people.
After a year of gradually raising my dose when the headaches would seem to worsen, my nuerologist left, but a new one came in to his practice. She told me I was at the max Topomax that I could take and took me off it and started the Depakote. I was not impressed. I took it barely 2 months.
They then took me off all prophylactic's. About 5 months ago they tried Inderal which also didn't help, and then asked me if I would try the Topomax again. The 2nd week I was on it I actually went 4 days without a headache!!! It was wonderful. Now 3 months later I still have my daily headaches but they are not usually as severe. I still have quite a bit of room to go up on my dose (which I need because I seem to develop a really fast tolerance to most drugs). Right now I don't wake up with them everyday but by 10 or so one is starting to set in. I have also recently been told I had Chiari Malformation. I have major neck pain on my left side along with some arm pain. Ironically this is the side in which my headaches are on 90% of the time. I don't know what pain is related to what anymore. I have just started phys therapy to see if that is any help.
Something else that I have found to help with a migraine or a REALLY bad daily headache is Relpax. I never saw results from Imitrex but really like the Relpax.
Didn't mean to get so lengthy on yal, as most of you know there is not a simple way to descibe what you are going through. I would like some more info on Chiari Malformation if anyone has anything to share. I am currently awaiting MRI results to see if it has at all changed.
Thanks for you time guys!! And best wishes to all of you!

Dell J

D Jones <dej1215@aol.com>
Monday, June 13, 2005 at 22:21:12



Hi there fellow suffererers,

Unlike Joy, I find that stress plays little or no role in my headache. In fact, one of the top specialist in the country stated on a medical record that "there is no psychological component to this headache". None. I can wake up in the morning perfectly relaxed and have it. In fact, I've noted that many times it is slightly worse when I am in an overly relaxed state. The predominance of a psychogical basis for migraine has thankfully gone out the window with the 8-track player and other such archain ideas. (To some, stress may be an important "trigger" factor in their headache, but it is certianly not a causative agent in migraine).


Like Joy I have suffered with vascular headache for thirty years. It is daily and constant and always unilateral---over and above the left eye, and now effecting the left temporal area. In the the last three years it exacerbated and doubled in intensity; I would say it went from a daily level 4 to a daily level 8 on the 1-10 pain scale. Fortunately, I am privy NOT to have nausea and vomiting with this headache. This L. sided headache had been diagnosed variously as cluster variant headache and most recently "intractable migraine". I have all these labels but am no better for the fact.

Because I was taking so many trips to the ER by myself, I had to go on pain management since 2001. I know this is controversial, too, but I felt that, living alone, I had no choice, if I wanted to keep up with my basic daily chores. I had to do it all. Also, I take two prophylactic medications---Prozac and Depakote TR (500 mg.), which may be helping slightly. But any measureable improvement in my present state is definitely noteworthy, and important.

I was wondering if there are any other headache sufferers out there in net-land who have a similiar headache profile-situation. If so , I would be interested in hearing from you, and perhaps we can share our respective successes and faiures as we endeavor to find the answers to our lifelong struggles. Whenever it seems I have exhausted all possible pharmaceutical options, I hear of some other potentially helpful headache drug. It seems there still are a few I haven't tried, like Topomax and anafranil. .

Recently I tried the new drug, Cymbalta, but my doctor started me way to high at 60 mg., and, I could not stand the stimulation. The anxiety it caused me was the most uncomfortable feeling, and almost as bad as the headache itself. I switched to the 20 mg. form, and still, it cause dme considerable anx.

Also, just this year I finally tried the Sansert, which for years had been considered a last resort drug for intractable migraine (because of potentially serious, life-threatening side effects, if taken continuously for more than 6 months at a time). Here, too, it definitely did help my energy level with the headache, but to a point where I could not stand it---the overstimulation kept me in a "wired state" all day. It, too I quit after just a few days on it and probably did not give it a fair "shake".

Now I am to a point where I am actually considering such interventional approaches as occipital nerve blocks and cryotherapy of the first branch, trigeminal nerve. Also, radiofrequency lesioning of the trigeminal nerve and the last, last thing I would ever consider would be deep brain stimulation from an implantable device in the hypothalamus---theorized to be the switch site of the "migraine engine".

Also, I would be blessed to find any fellow sufferers who could give me any tips based on their experience of the above interventional approaches---for the most desperate relief seekers.

Joy, Diana, Nicholette, Ken, Amber, Lorraine, Lana, Diane, Andy, Tai, Andrea, and Michelle---Let's all keep on keepin' on and encouraging one another not to give up. Fight the good fight, even if it is an every day battle. I pray you all receive significant relief from your pain. All of you be granted a new beginning in life.

Sincerely,

Franco

Franco <Franconian@hotmail.com>
Monday, June 13, 2005 at 14:45:30



Just wanted to tell you that my experience with Topomax was terrifying and dangerous. Within 2 doses I became suicidal. Within hours of going off of it, I was fine again. Please don't mess around with Topomax, especially if you are prone to depression.

clowngrrrl <clowngrrrl@yahoo.com>
Sunday, June 12, 2005 at 17:31:06



I just saw a news report that a woman had a defect in her heart. It was called Patent Foramen Ovale (PFO), and they repaired it with an outpatient procedure that plugged that hole.

Somehow small clots were passing through this hole, and causing mini-strokes.

This news report went on to say that the woman had suffered from Migraines, and after she had this procedure - NO MORE MIGRAINES. It further said that this procedure was effective in 55% of migraine suffers.

Could migraines be related to the heart somehow?

GW

GW <SSDD1950@aol.com>
Friday, June 10, 2005 at 12:51:15



Hi everyone! Like many of you, I suffer from migraine headaches.They started when I was eight years old so I've had them for over 30 years.
Last week I found out from an MRI scan that my migraines have caused many scattered lesions on my brain. Now,don't panic everyone for fear that you have them too! You may or may not. The lesions are considered benign (may be common on migraine brains), but because of them it is possible that some of my neurological symptoms such as occational problems with my speech, spelling, reading aloud, slight hand temors, and sharp shooting pains in my extermities are because of them. My doctor told me, I must destress my life!! He asked me what my major stresses were and I told him being around my husband and going to school full time, as well as some other things. I'm married to a wonderful man, but he has a very high stress personality and being around him makes me stressed too. My husband is being very supportive and he is doing what can to help me destress my life and his).
I am sharing this because I think stress plays a HUGE roll in getting migraines. Our minds and bodies are so connected,in my opinion, the negative thoughts (if held onto too long) can have effects upon our brains. I'm sure we all know someone who has been through something tramatic and they have eventually had problems with headaches or their health.
If you have migraines and you've never had a MRI scan I encourage you to ask your doctor for one. It is important to rule out other problems as well as giving you a peace of mind.
Migraines can make you feel like you've lost control of your life, but you can take control by finding your triggers and eliminating as many as you can.

Here are some things that I have found helpful besides just popping a (hopefully miracle) pill:
1.Taking a warm shower(this feels good when my head is killing me)
2.Drinking lots of water everyday (this helps our bodies get rid of toxins).
3.Eating well-balanced meals and exercising everyday (even just walking helps tons)and cutting down on the junk food with all those preservatives.
4.Watch funny movies (laughter helps reduce stress).
5.Having supportive loved ones or friends. (It is vital for most of us to have someone we can vent to)!
6.Accepting ourselves for who we are and letting those things that really don't matter go!
7.Getting a massage at least once a week if you can afford it.
8.Praying and meditating everyday.
9.Positive thoughts and regular affection (sex).
10.Staying away from negative people.

Hang in there everyone! You are not alone in your suffering!
:)

Joy <j.stucki@comcast.net>
Friday, June 10, 2005 at 12:08:01



I have a visual condition that is probably migraine related but has not yet been diagnosed. I want to know if any of you have experienced this. When I look at certain objects where stripes or straight or parallel lines are involved (window frames, edge of computer screen, edges of books, even bothers me when reading) these objects flicker or shimmer. This pretty well stops when I close one eye or the other and is better in the evening when it's darker. I originally had the opthalmic migraine (aura with no headache) but this seems to have been replaced by the flickering. I am currently on medication for blood pressure which situation is not completely resolved. Also lined up for an MRI. Have any of you experienced anything like this?

Diana <dianapilsworth@symppatico.ca>
Thursday, June 9, 2005 at 16:06:46



Hi! my name is nicholette. I am a sixteen year old girl who has been on a continuous rampage with migrains. At first I thought it was all a sinus infection, I soon found out it wasn't. I was getting migraines everyday. They were keeping me from school and from work. I was so tired all the time. I went to the doctors office on so many occasions and tried every migraine pill on the earth, or so it seemed. They finally gave me bottles of loritabs to numb the pain. I decided to look up all my symtoms on the internet and found many websites referencing to aspertame (nutrasweet/equal). I found out that aspertame is a FDA approved product that has 92 critical side affects ( those including migrains, cancer, depression and even death!) I found out aspertaime is in most gum, diet drinks, diet anything for that matter and somethings that aren't even diet. I have stopped using aspertame and the MIGRAINES HAVE STOPPED TOO! I check every lable before I eat oR drink anything! my headaches have stopped and I hope you DO THE REASEARCH yourself and see the scam the gov.t is pulling on us!!!!!!!!!!! EMAIL ME IF YOU FOUND ASPERTAME WAS THE SOURCE OF YOUR HEADACHES!

Nicholette Scott <Pinkconga@yahoo.com>
Saturday, June 4, 2005 at 21:08:15


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